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One of the worst aspects of suffering with POTS and/or dysautonomia is the lack of validation concerning the degree of suffering we are forced to endure. Much of that suffering is due to “invisible” chemical torture! My kids and I have endured this, but had no way to explain how we felt to our doctors or family. I hope this video helps you, your doctors, and your loved ones understand how we can be suffering so much — even when much “traditional” testing appears “normal”. I also discuss some of what I’ve learned to combat this torture so that you can live again, as opposed to what I came to call “pretend living”. Can anyone relate?
Oh, yes, I can relate. It’s a really great video Dr. Diana… thanks for making it.
I know “ramping up’ to make these informative videos must be a challenge for you each time. I applaud your continued efforts. Maybe it’s the music that helps keep you able to continue your valuable work. Music definitely helps me along the way.
I have a layman’s theory… First off, my father died due to complications from a non-vegetative, diabetic coma, after many months of suffering. And knowing he was so severely brain damaged gave me a great interest in how the damaged brain works… and to couple that, because I had been told years ago that pain actually “assaults the brain” – being a chronic painer, I worry about the future of my own pain reeking havoc on my already compromised situation.
So,there was a wonderful 1 hr news report that explained the concept of “Music Therapy” as a new therapy for treating ppl with head injuries of every sort, strokes, military personal with severe trauma, car wrecks, etc…, and the study found that ppl who participate in “music therapy” (it’s very specialized on the high end, and fairly new, probably not enough practitioners to go around, but critical care hospitals are using them, because it works!) Back to what the studies revealed… ppl who participate in Music Therapy had much quicker recovery time and much less extensive rehabilitation time. MRI’s taken all along the “music thereapy” journey revealed that these patients’ brains actually “re-mapped” neuro pathways around the damaged areas, and within the areas there were not damaged, and drastically enhanced much of their ability to learn to walk, talk, use muscles and motor skills… everything you might consider from total coma back to a much miraculous recoveries that were once unheard of and thought to be impossible.
Based on that, I’ve concluded that as this illness might be assaulting our brain on it’s worst days, or even the days that we are “Pretend Living” (that phrase hits so close to home, btw! Plus in itself, “Pretend Living” is most likely hard for the brain, especially on difficulty days.) However, with the help of music therapy, which I do as often as possible, being a music junkie, this might be slowing down or countering what some of my brain is dealing with. The TV special (I wish I had a tape of it, it was great,) revealed that just the simple act of listening to and simple tapping your feet or fingers to the music is of benefit. Playing along, singing along, or participating with instruments, even if it’s just drum sticks or a bongo, or strumming a guitar, is even better.. it seems the more involved you are with the beat and the rhythms, the more it benefits a you. Critical/trauma care ppl have to start off very slow of course and it’s still a long road back from where they were prior to their health event.
So to tie this up, it is my (layman’s) theory, that as our brains are being impacted by the illnesses, those who use music as a coping tool, or therapy, might actually be stimulating the brain to build new neuro-routing and re-mapping. Sort of like getting well, as you get sick… if that makes sense. I hope so. I am a challenged writer/composer tonight.
Best to you thank you for sharing your research and videos with us who are desperate for answers to the confusing maze of an illness.
Totally agree, Capri!!!! Did you see this video? http://prettyill.com/videos/watch/raw_dam_data
Have you noticed how many of us rely on music and how many creative and musical folks are in our “group”? My kids are musical prodigies, and I don’t think that is unusual. And if you want to grow new brain cells, just try to learn a new instrument! We had a great twitter discussion about music therapy in a recent twitter chat. HUGE believer, here! 😉
Yes, I did watch the entire video, at 3 twice already. It’s very informative and really helpful Re: HYPERADERNEGENIC POTS, which was the main focus of the video. I see my comment was targeted so much towards the last couple of minutes of your video. Maybe it was just was just a personal reflection of the moment. I think music has been a huge coping strategy for me at multiple throughout my life. I’d have never gotten this far if I hadn’t been a music junkie. Music is good for the soul, so it’s got to be good for the body. Again, great vid and a must see for Ppl living with Hyeradrenegenic POTS and shareable with those that love, care and live with them. Aren’t we a barrel of fun!
Thank-you for the video!! So educational!
I have a question though about the zantac that you mentioned on this video and others before it. I read in Wiki that using zantac can increase your chances of developing food allergy b/c the food proteins don’t get digested and enter the bloodstream… or something like that. That would not be good for people like us are taking zantac for allergy reasons!! Can someone explain.??
I was diagnosed with POTS thru TT testing in Jan. 2013 but am unsure if its the hyperadrenergic type bc catecholamine levels were not taken. Since being on mestinon and florinef I’m much better and the ‘acute stage’ I experienced last spring/summer is thankfully over. A few months after being on meds for POTS, sadly, my symptoms started to appear again, periodically at first, then daily. It was then that I started researching MCAS more in depth and am happy to note that since starting the zantac and antihistamine protocol mentioned by Dr. Diana, I have less dysautonomia symptoms although some mornings after 1 hour of being up and around, if I’ve ate or not, the symptoms come back for awhile. I will get huge brain fog and my legs feel like lead. I started taking .5mg of ativan when that happens (originally prescribed to help with sleeping disorder)and within 20-30 min. the symptoms go away! I couldn’t understand why but have since read that benzo’s are mast cell stabilizers!! I also started NASALCROM and after 25 yrs of chronic nasal stuffiness, I can breathe normal most of the time!! That is amazing! Also, my optometrist said she wouldn’t be surprised if I have Sjorgrens b/c of the incredible dry eyes I have (my doc says I don’t have it b/c yrs ago I was tested for autoimmune markers when I started getting joint pain). The optomistrist started me on OPTICROM last week and if that doesn’t help the red dry eyes, I have a script for PATADAY. I keep researching MCAS and wouldn’t be surprised if I have it. I also likely have Ehlers-Danlos. So thank-you Dr. Diana for your videos and hand-outs!! It is wonderful to have my symptoms validated 🙂
You are so welcome, Charlie1! I will be rolling out more research soon, but I will mention that I think it is a good idea to go down on the Zantac as soon as your intestinal issues (diarrhea) are under control. I use it about once a week now. My research is showing that some of what we are using may be working for different reasons than we originally thought! Now THAT’S interesting! Mestinon can be great, but I think it’s a good idea to reduce your salt intake if you can. It’s not good for our endothelium, and that is going to be critical for our future health. Work-arounds coming soon, but meanwhile, WHATEVER WORKS, my friend! 😉
I will reduce the zantac as I don’t have many IBS symptoms since changing my diet years ago. For me, the recent addition of zantac (75mg am/pm) helped with neurological symptoms by reducing my leg ‘heaviness’ and brain fog which is why I wonder if its more MCAS related than to my POTS. It will be a good experiment to see if those symptoms increase again when not taking the zantac.
I Googled ‘salt and endothelium’ and there certainly is lots of published data out there! It seems that salt loading can cause over-expression on blood pressure and vascular function. I never worried about a rise in BP b/c I’m hypotensive but hadn’t thought about the vascular system itself. Thankfully I already reduced my salt intake months ago when my stomach disagreed with the salt pills.
Thanks again for ALL YOUR WORK!!I Googled ‘salt and endothelium’ and there certainly is lots of published data out there! It seems that salt loading can cause over-expression on blood pressure and vascular function. I never worried about a rise in BP b/c I’m hypotensive but hadn’t thought about the vascular system itself. Thankfully I already reduced my salt intake months ago when my stomach disagreed with the salt pills.
Thanks again for ALL YOUR WORK!!Oh, charlie1, you may enjoy (maybe “enjoy” isn’t quite the right word!) this article about how salt may increase the propensity for acquiring autoimmune disorders: http://prettyill.com/downloads/Salt_linked_to_autoimmunity_diseases.pdf I never thought it was good for us long-term to treat our orthostatic problems by trying to “cover up” the symptom with tons of salt. Frankly, it didn’t work very well for my kids and I anyway! But I am aware that many of us develop numerous autoimmune disorders, so when I read this, I was even MORE motivated to find the underlying cause, and treat THAT! Be kind to your endothelium! We need it! 😉
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